The Invisible Generation: Ageing, Autism, and the Silence Around Neurominorities

When it comes to autism and other minority neurotypes, most research, charity fundraising, and public services focus on children. Campaigns highlight early interventions, school support, and family challenges. But what happens when those children grow up? Where do they go when their parents, often their main advocates and carers, can no longer be there?

The truth is stark: as adults, many of us become invisible.

This has furthermore been spotlighted by the US Health and Human Service’s Robert F Kennedy Jr who publicly says that he has never seen a 70-year old autistic person with support needs in the mall. We hope he considers deeper why that is. We are all here but hidden!

The Vanishing Point of Care

For autistic people, especially those with additional support needs such as intellectual or physical disabilities or communication differences, support systems often collapse at the moment adulthood begins. Pediatric services end, educational accommodations stop, and most autism-specific charities and funding streams withdraw focus.

As one 2022 nursing review notes, there may be a “substantial pool” of autistic adults “missing” from statistics, some living in closed institutions, others incarcerated, homeless, or simply retreating into their homes due to a lifetime of rejection and social exclusion (OJIN, 2022).

Fear of rejection is not abstract.Many older neurominorities avoid social spaces, not because they don’t seek connection, but because the world has repeatedly told them they don’t belong. When parents die, the safety net disappears. Without systemic alternatives, people are left with isolation, or institutionalisation.

What the Research Tells Us

Although historically under-researched, a growing body of U.S. studies is beginning to shine light on this neglected population:

• Prevalence: Around 2.2% of U.S. adults, 5.4 million people aged 18–84, are autistic, with numbers continuing to rise (Dietz et al., 2020; OJIN, 2022).
• Institutionalization: Commentaries from the Interagency Autism Coordinating Committee (IACC) acknowledge that a “significant number” of disabled autistic adults live in institutions (Robison, 2019).
• Ageing Outcomes: A 2024 review found that very few autistic older adults meet the criteria for “successful aging,” facing higher rates of medical problems, cognitive decline, and poor social participation (PMC, 2024).
• Mortality Risk: Autistic adults face a 2.87-fold higher mortality rate compared to peers (Sciencedirect, 2022).
• Research Gaps: Despite a 392% increase since 2012, studies on older autistic adults remain just 0.4% of all autism research (PMC, 2022).
• New Efforts: Landmark U.S. initiatives such as the ACE Project (University of Utah, Wisconsin, Florida) are now exploring how aging impacts health, cognition, and brain function in autistic adults (University of Utah Health, 2022; ISLA Network).

These findings highlight what many of us know from lived experience: aging while autistic is an uncharted territory, marked more by invisibility than by support.

The Human Cost of Invisibility

The invisibility of older neurominorities is not accidental, it is a form of systemic neglect. Society does not want to see us as we age. The non-speaking adult in their 70s, the autistic senior who never lived independently, the person with multiple disabilities who still deserves dignity and care: these are lives too often hidden behind closed doors.

And invisibility affects not only those with high support needs. Consider the case of a former hedge fund manager, now 70, who lived what many would call a “successful” life: running billions in assets, known for his sharp risk-taking mind and unconventional insights, hallmarks of his neurominority brain. Yet as he aged, those same traits became harder to manage. Executive functioning, once a strength, began to unravel.

The onset of possible dementia might have intensified his neurominority traits. With no close family, and an increasing inability to organise staff or manage the complexity of hiring care, he found himself isolated despite vast wealth. Money could buy services, but it could not buy the understanding, patience, or community he truly needed.

This example shows that ageing neurominorities are vulnerable across the spectrum of wealth and class.

Institutional neglect is not only a poverty issue, it is a societal blind spot.

Rethinking Solutions: Neurodiversity Living Communities

The solution cannot be to continue shuffling adults with minority neurotypes into isolated care homes or prisons of silence. Instead, we must reimagine living itself.

One vision is neurodiversity living communities:

• Integrated: Communities where neurominorities and neurotypicals live side by side, not separated.
• Layered Support: Offering different levels of care as needed, from independent living to supported housing.
• Shared Responsibility: Built on mutual care, respect, and equality, where inclusion is practiced daily, not promised on paper.
• Preventing Isolation: Providing spaces to belong, reducing the retreat into invisibility.

Such communities would not only protect vulnerable adults when parents die, they would enrich society, proving that diversity of mind and life is a strength, not a burden.

Call to Action

It is time to stop treating neurominorities as a childhood issue and start acknowledging the reality of a lifetime. We are here, we are ageing, and we are not going away.

Charities, governments, and research institutions must:

• Invest in lifespan research, not just childhood studies.
• Build housing models that respect neurodiversity.
• Fund community initiatives that prevent isolation.
• Recognise the human rights of older neurominorities, not only their childhood needs.

If society can look directly at us, not as invisible, not as problems, but as people, then we can begin to build a world where every age, every neurotype, and every support level belongs.

References

1. University of Utah Health (2022). U of U Health Lands Key Role in $10 Million Landmark Study on Aging in Autistic Adults. Link
2. PMC (2022). Older Age Autism Research: A Rapidly Growing Field, but Still Small. Link
3. PMC (2024). Aging Well and Autism: A Narrative Review. Link
4. OJIN (2022). Adults and Seniors with Autism Spectrum Disorder. Link
5. ISLA Network. ACE Project – Toward Healthy Aging in Adults with Autism. Link
6. Autism.org (2020). Prevalence of Autism in Adults Increasing Rapidly in the U.S. Link
7. JAMA Network (2024). Autism Diagnosis Trends Among U.S. Children and Adults (2011–2022). Link
8. Robison, J. (2019). IACC Full Committee Meeting Presentation on Autism in Adults. Link
9. Sciencedirect (2022). Mortality in Autistic Adults. Link